What's happening to me?' Successful translator and linguist Helga Rohra was understandably good with words - that is, until she found herself getting in a muddle when she spoke. She started to forget the way home, even though she could remember her address. Her confusing symptoms increased and Helga was diagnosed with dementia at age 50 - but she hasn't let herself be labelled with the usual stereotypes. With entertaining vim Helga shows that her life is still as abundant and self-determined as ever, dismantling the negative stereotypes that often surround a dementia diagnosis. She speaks frankly and with humour about her diagnosis and life with young onset Lewy Body Dementia. She explains the changes in her everyday life and the challenges she faces, and shares practical tips that prove it is possible to live well with dementia. Helga also talks about her activism work, which has made hers one of the key voices internationally in dementia advocacy.

A New York Times Book Review Editors’ Choice An essential book for those coping with Alzheimer’s and other cognitive disorders that “reframe[s] our understanding of dementia with sensitivity and accuracy . . . to grant better futures to our loved ones and ourselves” (The New York Times). An estimated fifty million people in the world suffer from dementia. Diseases such as Alzheimer's erase parts of one's memory but are also often said to erase the self. People don't simply die from such diseases; they are imagined, in the clichés of our era, as vanishing in plain sight, fading away, or enduring a long goodbye. In On Vanishing, Lynn Casteel Harper, a Baptist minister and nursing home chaplain, investigates the myths and metaphors surrounding dementia and aging, addressing not only the indignities caused by the condition but also by the rhetoric surrounding it. Harper asks essential questions about the nature of our outsized fear of dementia, the stigma this fear may create, and what it might mean for us all to try to “vanish well.” Weaving together personal stories with theology, history, philosophy, literature, and science, Harper confronts our elemental fears of disappearance and death, drawing on her own experiences with people with dementia both in the American healthcare system and within her own family. In the course of unpacking her own stories and encounters—of leading a prayer group on a dementia unit; of meeting individuals dismissed as “already gone” and finding them still possessed of complex, vital inner lives; of witnessing her grandfather’s final years with Alzheimer’s and discovering her own heightened genetic risk of succumbing to the disease—Harper engages in an exploration of dementia that is unlike anything written before on the subject. A rich and startling work of nonfiction, On Vanishing reveals cognitive change as it truly is, an essential aspect of what it means to be mortal.

Kate Swaffer was just 49 years old when she was diagnosed with a form of younger onset dementia. In this book, she offers an all-too-rare first-hand insight into that experience, sounding a clarion call for change in how we ensure a better quality of life for people with dementia. Kate describes vividly her experiences of living with dementia, exploring the effects of memory difficulties, loss of independence, leaving long-term employment, the impact on her teenage sons, and the enormous impact of the dementia diagnosis on her sense of self. Never shying away from difficult issues, she tackles head-on stigma, inadequacies in care and support, and the media's role in perpetuating myths about dementia, suggesting ways in which we can include and empower people with the diagnosis. She also reflects on the ways in which her writing and dementia advocacy work have taken her on a process of self-discovery and enabled her to develop a new and meaningful personal identity. Kate's powerful words will challenge misconceptions about dementia, and open our eyes to new ways of supporting people with the diagnosis. A must read for people with dementia and their families as well as for professionals and carers.

Insightful and inspiring presentations by the foremost dementia advocate, compiled here for the first time, provide new ways of understanding dementia and better ways to ensure that the voices of people with dementia are heard.

This book provides a vivid story of life with Alzheimersor at least, one story of one family with an unusual sense of humor. Told in an unconventional style (through the alphabet rather than chronologically), Leslie F. Hergert describes the sadness, humor, and challenges of caring for a partner with Alzheimers Disease through its many stages. Each letter of the alphabet provides reflections on some facet of the Alzheimers experience, told with honesty and a wry eye. Leslie spoke at our conference on Dementia and attendees said that her stories were the most powerful part of a very good conference. Her book extends that speech to provide an inside view of living with Alzheimers, a comfort for others living with the disease and an education for outsiders. Nancy Willbanks, Somerville Cambridge Elder Services Ms. Hergert writes candidly and poignantly about her experience caring for her husband with early onset Alzheimers Disease. She touches upon the major cognitive, psychological, and functional changes that occur over the course of the disease, and she provides practical tips to caregivers on how to manage them. She also writes movingly about the multiple emotions she felt as she accompanied her husband on the journey, reminding all of us that there are moments of joy and laughter even among those of loss and grief. I have no doubt that readers will find her words of wisdom helpful. Serena Chao, MD, MSc; Geriatrics Division Chief, Cambridge Health Alliance; Instructor of Medicine, Harvard Medical School

Keith Oliver was diagnosed with young onset dementia in 2010, and has since become a leading activist for dementia care, and an international speaker. Telling his story through a diary format, this book gives an unparalleled insight into what day-to-day life with dementia is like, and how he continued to live a full life after diagnosis.

An edited volume discussing the underpinning concepts of citizenship, agency, and participation in the context of the everyday lives of people living with a dementia. The editors explain the theoretical underpinning of citizenship before the contributors show the way it can broaden the everyday lives of people with dementia.